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Month: May 2015

I didn’t realize just how hard I’ve worked to get the boys where they are today… the obstacles we’ve face, the countless hours of OT, PT and Speech therapy we’ve done on our own and with therapists to get to where we are today… until I had to start from scratch with Jaxson.

I actually had to REALLY think… what on earth did I start doing with the boys? Because “normal” play for this age is over his head for right now. I had to go back to basics, remember where I started with Justin and Tyler… what games did I make up or toys did I create or do that helped them learn and explore safely?

This whole experience with Jaxson has been a huge eye opener of just how much Justin and Tyler have grown. It’s a little overwhelming… because I know just how much work I’ve got in store with me and Jax.

I’ve still been in kind of denial about Jax… Especially without a formal diagnosis, I didn’t want to be on either side of the fence about him being Autistic. But everyday, I’m being pushed more to one side than the other.

So, instead of trying to get him interested in things that he “should” be interested in at his age, I’m going to start from the beginning… like I did with Justin and Tyler after they regressed and work our way up. I still wanted to hold out hope that he was just a “slow learner”. That him being sick a lot or going through growth spurts (so he needs more sleep) have been slowing him down… but the doctors apt was the real eye opener I needed. The questions she asked about what he COULD do and then the pamphlet of the things to do with your baby at this age… I’ve decided to stop driving myself crazy.

Jax has a form of Autism and that’s okay. We are going to do everything we need to to help him, just like we would if he wasn’t Autistic. We’re just going to do it differently. 🙂
First game “In and Out”. I put all the toys in, and he dumps them out… until he gets to the point where he starts putting them in. Second game will be “Up Up Up Up DOWN”… where I stack the blocks up up up up and he knocks them down. These will help with Small and Gross motor skills, taking turns, action-reaction, sequencing; it teaches him what he should do with the toys, and it also teaches him a few words. 🙂 Those were the boys favorites when they first regressed. 🙂

As of right now, he just wants to chew on them. 😀 lol

We’ll be setting up all his apts to get evaluated this coming week… so this summer should be a busy one! 🙂

Justin’s lack of understanding and complete lack of verbal skills makes it really hard for Justin to be able to do things on his own and be independent. Sometimes that makes him get really upset, which hey – it’d make me angry too if I couldn’t explain to someone what I wanted or what I was thinking. It’s frustrating for me not to be able to tell him that there are really bad mosquitoes outside and that’s why he can’t play outside rather than him thinking I’m just being a mean Mom.

But all of that is partially the reason we allow Justin to have an iPad for a lot longer than we did before. It’s one thing that he’s really been learning how to use by himself. He doesn’t need a lot of assistance with (he USED to need help every three seconds when he’d bump the screen and pause the movie or something)…. but over the past few years, he’s REALLY learned a lot. We’re hoping that all the skills he’s learning now will help him once we’re able to afford (and he’s ready to use) and AAC device to help him to communicate.

Another thing we’re really excited about recently with Justin is he’s starting to watch and explore new movies and TV shows. For the last 5-ish years, Justin would ONLY watch the movies and shows he was watching around the time he regressed. So anything he hadn’t already seen and liked at that time, he would scream bloody murder until we turned it off. But now, he’s watching different shows, different movies…. thanks to Amazon Prime. We started using iTunes once we realized we were paying a LOT to replace movies that would get damaged… and with iTunes, Justin could look at the pictures in the titles menu and see where he wanted to put his movie to start… where Amazon he couldn’t. So, it wasn’t until the last 2-3 months that Amazon has become more interesting for him. He can use it to rewind 10 seconds or fast forward 10 seconds. And for parents with kids on the spectrum, you know how much they love their favorite parts of shows and movies. So that feature is a major love for Justin! lol

But unlike iTunes, Amazon Prime (with the membership – about $100 a year), Justin can check out free shows and movies. It’s kind of like Netflix or Hulu Plus. (Tyler likes Netflix but Justin has a harder time understanding how to make it work)

So thank you Apple, iTunes and Amazon Prime for helping my Non-verbal son learn to become more independent. 🙂 ❤ Because there really are very few things that make him THIS happy. 🙂

“I’m still working on how to avoid potential meltdowns with my 5 year old. He’s non verbal so I don’t always get it right away. Any tips from the parents???”

I personally think it REALLY depends on what he’s melting down over… “Each behavior has a reason”. And each kid is different… in order to prevent or quell a meltdown, you have to first figure out why they’re melting down and how to help them through it or how to avoid it… but for the most part, you have to figure out what it is first.

Maybe it would help to write down when, where, what time of day, etc the meltdown happened since right now, it’s not as obvious what’s causing the meltdown.

Like with the boys, we figured out that we were ONLY able to go to one specific grocery store. That’s the one they felt most comfortable at. They couldn’t tell us that, but after a while, we figured out we had a much easier time going to that grocery store than any others. A friend of mine had said that you have to make a mistake a few times to realize it’s a mistake. Which I think is genius.

Or we also figured out that those situations are just WAY too hard for them to manage… so if they had something to help cope or take their minds off of everything else going on around them, our experience would be much better.

So we brought drinks, snacks, toys, favorite blankets and tablets with movies downloaded to them. Years later, we can now go to the prefferd store, and make it through a quick trip without food, drinks or tablets. However, we know we still have our limits. If we know we’re going to be there for a long time, or we had to run errands before, or if they’re not having a particularly good day, we ALWAYS make sure to have everything on hand just in case.

That’s another thing…. we ALWAYS have a “survival kit”… or… diaper bag on hand. Even at almost 6 and 7 years old, we bring a diaper bag (and not because they’re still in diapers)… we bring toys, snacks, drinks, devices… now that things are better, we always try to start the trip out using nothing and work our way up… at first sight of an issue we start with drinks, then snacks, then a toy and lastly the device. Then worse case, we leave.

That brings me to my last point.

At least with us, our kids just can’t tell us what’s wrong… and we just aren’t be able to figure it out…. sometimes the BEST thing you can do for yourself and for your kid is just to plain leave. Leave your cart in the middle of the store, throw your kid over your shoulder and high tail it to the car. Justin is 99lbs and I will throw him over my shoulder in a heart beat and book it to the car if I think it’s necessary for either of us.

So ALWAYS have an exit strategy. If I’m going with their Dad, before we even unbuckle our seatbelts, we have a plan. If it’s splitting up or staying together, we go through what we’re doing so we’re on the same page.

“Okay, we’re going to do this this and this… if something happens, meet here or call me or this is what we’re going to do.” That way there’s no confusion, less screaming and yelling and everyone knows what they need to do in a “crisis”.

We always TRY to avoid a meltdown, be prepared and hope for the best. But sometimes that’s just not going to happen. It takes a while for kids/people on the spectrum to learn, understand and be able to cope. It doesn’t make them bad or misbehaving… it’s just too overwhelming. It makes it even harder for us as parents when they’re non-verbal because we have to guess how to help them.

Sometimes meltdowns are just going to be unavoidable. So be understanding, and don’t be hard on yourself either. If you don’t have to, do push the situation, but keep trying. Never give up… eventually it WILL get easier. 🙂

I recently signed up our family with Smart 911.
It’s a free Safety Profile that provides additional information to supported 9-1-1 centers and first responders.
So, if you ever need to call 911, they’ll already have details like: pictures of your family, the fact your child might be on the spectrum and can’t communicate, who might wander away from a wreck, or who might hide and scream if a firefighter comes in and tries to get them out… or if they’re on life sustaining medicine. They’ll have that incredibly important information; because you might not always be able to explain that to them.

We never REALLY thought about it until we took an Autism Risk and Saftey Management seminar with Dennis Debbaudt. After it was over, we started getting things set up so we would be prepared for times where we might not be able to communicate for our kids in emergency situations.

No one EVER wants to think about being in a situation where we can’t help our kids. That’s our job as parents, to protect our children. But what if you couldn’t?

What if you’re driving back from a therapy session, singing along to your child’s favorite song for the hundredth time today. The sun is shining. It’s a good day. No one had a meltdown, traffic wasn’t too bad. You even had time to stop and get coffee as a treat to yourself. Smiling at your amazing child in the rear view mirror, you look back at the road as you enter the intersection. You look to your right and realize the car isn’t going to stop at the red light. In that brief second… you KNOW you’re going to get hit. They’re coming way too fast. Even if they slammed on their breaks, they’re going to hit you… and your child. Your beautiful, amazing child, who can’t talk and needs you… needs you to translate, to protect them… to be there… and you’re about to get hit.

Some how you’re awake after the car hits you. Everything is loud. Your child is screaming. You try to comfort them from the front seat. Everything is getting fuzzy and there’s a ringing in your ears. You can’t focus. Looking around, people are on their phones but the ambulance isn’t there yet. You try to unbuckle your seatbelt, and turn to get to your child who is still screaming… then everything goes black.

When the police, fire department and ambulance shows up… and you can’t explain to them what’s going on, why your child is SO upset, why they’re not listening, why as soon as they get your child out of the car that they’re going to bolt… how if they just give them their head phones it won’t be SO bad… Or that their inhaler or insulin is in your purse… you’d want the emergency personel to have that information, wouldn’t you?

No one WANTS to think things like this could happen… but they do. Every single day. Something similar happened to my husband a year and a half ago. Thankfully he was the only one in the car, but our kids very easily could have been… read our story here.

I’m a Mom with kids who don’t understand the concept of Mother’s Day, let alone Birthdays, Christmas… or any other holiday. They can’t verbally tell me they love me, if I want a Mother’s Day gift, I have to make it with them myself, and sometimes thats even like pulling teeth.

This wasn’t what I thought it would be like to be a Mother.

I’ve always loved kids and I always knew I wanted to be a mother. When I thought about what kind of mom I would be… I always imagined crafts, baking, nature walks… being a tough but loving mom with kids who would pick me weeds and hand draw a card for me on my birthday or Mother’s Day; and that would be enough. That would fill my heart with such love… I would tuck them into bed, read them stories and sing them songs… they would whisper “good night mom, I love you.” and I would keep the door cracked open to ward off any scary monsters.

That was “the dream” for me. Sure, I wanted to travel the world before I had kids, I had a lot of plans for my future… but when I thought about kids… that’s the image I would have.

My life… isn’t… “quite” like that.

My kids can’t talk, and the one who is finally learning to script/mimic doesn’t say things that help him communicate his wants and needs. Really, they’re still toddlers in bigger kid bodies.

Tyler is starting to take interest in what I’m doing in the kitchen at 5 ½… Justin didn’t start taking an interest in coloring until last year (when he was 5 ½). Nature walks are a rehearsed route that we’ve walked hundreds of times, so that they know exactly what is expected of them and where they need to go for their safety. Since they don’t understand the concept of danger. We can’t stop to talk about the leaves or bugs we find on the way, because that’s not part of the routine (because it can change). Singing songs and reading books is nearly impossible. I still TRY to work it into their lives, but Justin will start screaming bloody murder and Tyler will run away if I pick the wrong song, or they just leave or take the book if I try to read to them.

I have to “lock” their door at night, or they will get out of their room and trash the house or hurt themselves by climbing or playing with things they shouldn’t (like knives).

My kids are 6 ½, 5 ½ and almost one… and they can’t talk to me. I talk to them, explaining what I’m doing and what we’re going to do, hoping that one day what I’m saying sinks in. But no one talks back to me. I’ve even ended up having conversations with myself and then telling myself I need to stop talking or I’ll end up going crazy. lol

There are a LOT of things I didn’t expect to come with Motherhood. Because I never really thought I’d have a special needs child. Don’t get me wrong, we always said that we will take whoever God gives us, and it didn’t matter what they had… but it’s one of those things, you never REALLY think about it unless you’ve gone through it before or someone in your immediate family/life is going through it.

But what I couldn’t even come close to imagining was loving someone this much. Just the thought of losing my kids makes my heart break. Like those few seconds to a minute when one of the boys used to go missing and I couldn’t find them in the store. Or the day Justin swam too far out into the ocean and it seemed forever until I could get to him. They may not be able to tell me they love me… but when I sit next to them, and they look up at me and smile, giggle and lay their head on me, tells me they do. No matter how frustrating my life can get, my kids are worth all of it. I cannot possibly put into words just how much I love my kids. They truly ARE my life!

I knew I would love my kids, and I knew I would try to be the best Mother I could be… but thinking about it and actually doing it… are way two completely different things. I know in my heart that I wouldn’t hesitate to die for my kids. I will fight with every fiber of my being to do what’s right by them. I love them more and more each day… and let me tell you, there’s NOTHING like holding your newborn baby.

They make me want to be a better person FOR them.
To be a better listener;
more patient…
a better communicator…
a better advocate…
a better role model…
a better me and be okay with being me. Because I want them to be okay and happy with being themselves.

The best job I’ve EVER had and could ever possibly have… is being a Mom.

It’s the end of Autism Awareness Month, and if you’re a regular on my page My Crazy Little People, you’ve seen the little cartoon characters I’ve been making with the hashtag #YouMightBeAnAutismParentIf… If you haven’t click here to check them out. 🙂

However, they can be incredibly time consuming, and difficult to create with the limited things I can do on the websites I use. Instead I decided to make a list of all your amazing quotes and post them in my blog!

I hope these will give you comfort in knowing you’re not the only one going through the same thing or a laugh knowing there are others similar to you! 🙂 (Which IS the reason I started my page! 😀 )

Here are the responses from my page to finish the sentence You might be an Autism Parent if…

if your child can explain in detail why it’s possible
for a human to hold an alligator’s mouth shut with
his or her bare hands, then as a followup asks for a
detailed explanation of what the
expressions ‘blew it’ and ‘nailed it’ mean.”Where’s Mommy’s Coffee?

your child Streaks.Melissa Dunn

when he tries something new and IF he likes it…
it’s like winning the lotto and posted on FB.Kimberly Penaloza

your child refuses to wear a winter coat even
when it’s -30 below and a foot of snow!Stacy Lengyel-Sclesky

my child can’t stand the smell up cupcakes
but can sit on the toilet for 45 minutes pooping
and not be bothered the smell.Kimberly Morales

random shrieking is not a cause for alarm.Alex Pankratz

you can’t buy their pants in a
normal store anymore,
cause elastic waists aren’t
made that big at K-mart.Alex Pankratz

you avoid making too much noise while
opening up a snack for yourself, only to
realize your child’s already there.Lorena Sanchez Jauregui

you have to tip toe to go to the restroom very early
in the morning to avoid waking up your child….
you have to replace headphones frequently.Lorena Sanchez Jauregui

If the sound of grinding teeth suddenly became
so normal to you (because That’s all he does)
after years of it bothering you.Prinsesa Martinez

loves a bath but lord forbid
the shower gets turned on.Felicia Goade

you find your shoes in the freezer
and put them away without thinking twice.Sara Byk

your child has you trained to script with him
in barks, and you know all your lines exactly.Sara Byk

you have to wrestle a bite of cookie into your
child’s mouth before he realizes it’s a
cookie and then you have to hide the bag
bc he now knows it holds cookiesEmma Alspaugh

you have to cover your child’s ears during
their own birthday songs at restaurants but
they’re still clapping along!Emma Alspaugh

you celebrate the first time your child lets
you trim their nails without a meltdown.Danielle Alonzo

you set a special ringtone for
your childs school and/or daycare.Kate Wright

after your child’s diagnosis, and learning
about all the different sides of the spectrum…
that you start realizing you may be on it too.My Crazy Little People

If I missed anyone, I’m sorry! I tried to go back through all the comments on all of the pictures too to try to find any! If you have one of your own that isn’t on the list, leave them in the comments! 😀

**If you see your quote and do not want it on the list, please either leave a message or contact me directly and I will edit it off the blog. **